Life after Traumatic Brain Injury

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It’s freezing cold here at the moment and I’ve been in bed for the past week recovering from an activity last Saturday that drained me. Whilst sitting here twiddling my thumbs I thought I’d do a bit of the old writing and let you know what’s going down for me right now.

Firstly I’ll tell you I’m feeling a little bit furious, a little bit sad, a lot tired and incredibly deterrmined. This festive period is being defined by a new challenge in my life and that is to take on the current British government (not literally but you’ll see what I mean soon). I try not to be political on here but I will make no bones about my disgust and distaste for the current lot of clowns in Parliament.

I have watched from the sidelines for the past few years as more and more sick and disabled people have been thrown into extreme poverty and some have even died or taken their own lives (according to CAS this number is in the tens of thousands, yes you heard that right) due to Social Security reform in the name of austerity. NHS Digital also report that in 2016 rates of self harm and attempted suicides for ESA claimants had risen by 43%.

I was watching knowing that eventually they would come for me.

When the brown envelope (brown envelope-itis is becoming a thing) dropped through my door I had to take a deep breath and centre myself before I opened it, I knew it was my turn on the merry-go-round. I filled in the form for PIP which is in itself a bit of an ordeal. Having to relive everything that has happened and putting into black and white how different things are for you triggers stuff. All that stuff you’ve gone through and endured comes bouncing back up and straight out of your eyeballs.

Once this was done it was a question of waiting for the assessment. Ah the asssessment! Where one of the evil twins (ATOS or Capita, urgh!) send round a ‘health professional’ to ask questions, observe you and push for concrete answers to extremely abstract concepts – they also make you touch your toes (despite the assessor telling me that this part of the assessment wasn’t relevant to my condition she made me do it anyway then used it against me in her report). The assessment is not fit for purpose, it doesn’t factor in invisible disabilities. Yes I can touch my toes but I can’t get out of bed to do it!

After waiting a few weeks for the outcome then being refused any sort of financial assistance I had a meltdown, a proper meltdown. It dredged up those feelings of hopelessness and uselessness as well as having thoughts of suicide. Once the despair abated, then came the anger and determination, I was not going to take this lying down (well maybe I’d be lying down but I’d fight). So I researched the appeals process and began the frustratingly slow meander through the highways and byways of the Social Security system. I requested a copy of the assessment report (you can do this, it’s your right to know what was said) and it was like reading about a different person.

Now I’m not saying that an outsourced agency like Capita will lie about people, ah…. ok… yes that’s exactly what I’m saying. I’m also aware the staff get bonuses for every person they throw off benefits, sort of like a cruelty pay rise. The report could have won the Booker Prize for Fiction. It was full of contradictions and things I didn’t say as well as omitting things I DID say. I was also deemed not disabled due to being intelligent and aware of my condition, I MEAN, GIVE ME A BREAK that is the most outdated and Victorian attitude about the disabled I’ve ever come across. This idea that being disabled equates to some Quasimodo-like existence where we are not articulate and smart and funny. We’re either ‘inspirational’ people who beat the odds to win medals and row the Atlantic single handed or we are dribbling no hopers. There is no middle ground. Society wants you to be one or the other, no shades of grey. Heaven forbid you’re disabled and dare to scuttle out from your cave and try to have fun and enjoy your life.

So we are now locked in a festive waiting game. No decisions, no supplementary payments, no hope until after Xmas. As a knock on effect of PIP refusal Mr Braingirl has also had his Carers Allowance stopped so we are truly on our arses right now. BUT they will not beat us. I want to see this through, it will take all my energy and all my courage but we will go to court and have our say. If we fail, we will try again. I’m a working class Northerner which means I’m genetically predisposed to rolling my sleeves up and taking on the powers that be.

This is the thing with ‘austerity’, the rich and powerful have all they could want but they want even more and not only that, they want to stop you from having any too. They are creating a culture of ‘unworthy poor’ where having less is some kind of disease and something to scorn. They are deciding who to throw crumbs to but making them somehow ‘other’ in the process. Ably assisted by a media who help deflect your anger from where it should really be directed and instead make you angry at refugees, the sick, the disabled, the poor, the young and the vulnerable. Your brother or sister who is struggling and trying to access a lifeline that was created to help when circumstances beyond their control affects their life. This degrading and dehumanising system that is now in place was unfortunately voted for by the public, a section of the public who think society exists solely for themselves, the ‘I’m alright Jacks’ the ones who have lost compassion somewhere and forget that we are one, that we work together. The public who don’t really believe that this is happpening.

This is not something that is occurring in a film, this is real life. YES it is happening, NO it is not made up and it’s killing your fellow human.

I’ve been quiet this October, I had ideas for posts to write but I was moving house and my motivation had gone AWOL again. Initially I wanted to write about the stress of moving house and the flavour given to it by brain injury but something else popped up instead. Inspired partly by a conversation I had on Twitter with a friend and partly by how I’ve been feeling this past month I’ve decided to talk about the ghost like nature of my existence and my invisible disability.

I’ve touched on this before but it became very prominent to me these past few weeks. In all the hubbub of packing and unpacking and the assimilating to my new environment I’ve found myself doing a lot of staring at the walls, this is perfectly normal with brain injury, staring at the walls becomes an Olympic level sport. With the staring though came the ruminating, I realised I was just floating through my days at the moment. The location move means I’ve had to move services so a new keyworker and a new brain injury team have to be put in place, this means I’ve effectively had to start from scratch again. That aside, staring at the walls can bring new insights and feelings. It’s good every now and then to stare at the walls, the brain injury requires it, it gets tired and full and so a good session of wall staring empties and calms the mind. You kind of enjoy these sessions, they are useful and not to be resisted.

It was during one such session of gazing that I started to wind myself up, my mind started to tell me I have no useful purpose in life, that everything is pointless and what quality of life do I have brushing toast crumbs off my dressing gown and worrying all day? I started to buy into that fallacy that being ‘useful’ equates to busyness and having a soul and back breaking job. I’m constantly told on a daily basis that a life on benefits means I’m a strain, a leech, something to be eradicated. Because of course when I filled out my life questionnaire they were the boxes I ticked for my life path. I really wanted to spend my days sad and worried and in pain it’s a right laugh.

My friend on Twitter who has her own battles to fight said it’s like life is on standby during the day, this sums it up nicely for me, you kind of go into pause mode until tea time and then fade back into existence for a few hours until it all starts again the next day.

It also didn’t help me when someone close to me and Mr Braingirl said we ‘don’t live in the real world’ and that blogging isn’t ‘real life’ and ‘why can Lauren do some things but not want to go out for meals?’. Imagine being told after battling for 2 years straight that the outlet you have carved that has some therapeutic value for you isn’t ‘real’. I assure you, this is as real as it gets, I would even argue that my existence has made me butt heads with reality in a way that you will never comprehend. However, this really upset me and made me realise that because I present well ( I speak well, I move around without help) that people just don’t understand my life, they probably never will and it just adds fuel to the current rhetoric that people like me on benefits and disabled are lazy and feckless. Would this person in question have said something like this about a cancer patient or a wheelchair user? I very much doubt it. The thing that annoys me the most is that they have this resource to help them understand me and they wont even look at it.

I struggle every day, I’m not saying this so people will feel sorry for me, I’m saying it because it’s fact. My frontal lobe was damaged which means my mood isn’t regulated, I can burst into tears at any time for no reason, I can have 15 different moods in one day. I wake up in the morning and have no idea how my day is going to go. I’m also fatigued a lot, if I go out for lunch one day and converse in a noisy restaurant I have to spend the next day recovering. My brain injury has made me sensitive to noise, smell, taste and temperature. If there’s too much background noise it fights to process everything and exhausts me, this is why I can’t really socialise anymore. I get hot flashes if there’.s even a slight increase in temperature. NONE of it is fun.

But the majority of people don’t see this, they just see me when I’m on an upswing, when I’m able to have a conversation without getting confused, when I can manage a full day without being distressed and crying and you know what? that suits them because they don’t want to know when the other stuff is happening anyway. It fits into their life better if I’m not a mess. I don’t get to escape those bits though so a little more patience and understanding is always appreciated.

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It’s Monday morning, it’s dull and rainy and I’m tired. The Spring, like my mood has gone a shade on the grey side.
I’ve been sat up in bed today on my Twitter and realised I’m in that lovely place again. I’m setting up camp in hopeless and lost town. I’ve no idea how long I’ll be here for but all I know is that it feels horrid and I seem to grind to a frustrating and upsetting halt.

There is usually a trigger to my jaunts into this place and I have to sit and think about what has caused it, it’s usually something that occurred a few days earlier and seemed fairly innocuous at the time. I had a busy (for me) old time of it last week, I was on local radio and TV for Action for Brain Injury week. I had to go to the BBC here in Belfast and do a quick interview and then get filmed at home. It was an early start but I pushed through even though I knew it would make me fatigued because it was important to spread awareness. I was very pleased to have done it and it brought a little bit of excitement into my day. That day I also had another appointment later in the afternoon to go to so by Tuesday evening I was completely done in.

Add to this my period (sorry) it’s not something often talked about in brain injury circles but when you do mention it, you get lots of ‘oh my god, YES!’. The menstrual cycle, often a time of mood swings and cravings becomes ‘Period Part 2: The Revenge’ when added to a brain injury. I get deep sadness and also fatigue on top of tiredness on top of fatigue. I also get more aches and pains in my surgery site at this time which gives me lots of nerve pain and thuds and pins and needles, these make me anxious. As a result I often become completely immobile for a few days. It saps my will and my precious energy. I cant even begin to describe it adequately but again, unless you experience it yourself you’ll never understand. It’s not I assure you, a very fun time.

So yes, I’ve been a sobbing tired mess for 4 days. But there’s been something extra this month and I couldn’t figure out what it was, then the penny dropped

I had another epiphany this week, one that sneaked in quite quietly but means I have to readjust myself once more and this readjustment always unsettles me. I have just started accessing a vocational service called CEDAR, its a service to help me get back into education or employment as well as finding my way back into my hobbies again and it was during my meeting with them that my mind shouted at me “YOU’VE GOT A BRAIN INJURY!” well yes, you may be thinking dur, no surprise there, but let me explain.

I have up until this point thought ‘oh, I have a brain injury’ now I KNOW I have a brain injury. I have rather foolishly been thinking it happened to me, but I’ll be the one, the one that it didn’t affect in any way, the one who will be 100% better. Well sorry sunshine, but this aint necessarily so! I am a service user of agencies put in place for people with a disability, I have a disability, I finally realise that now. I have a disability that makes me sad, tired, unable to do what I used to do and here’s the clincher, IT WILL ALWAYS BE THIS WAY, it’s going nowhere. It makes me have to look at what I want to do and see how I can make it manageable, is it even a possibility for me anymore? This made me incredibly sad and feel defeated. This has been the cause of my retreat into myself again.

As always though, I sit with these feelings, I accept them and I start to see the other side…. eventually.

For now I am sad, frozen in bed, I am tired and I am hating my injury, hating how it’s changed my life and crying for my loss again. The grief in full swing once more. THIS IS NOT EASY.

I know this song is on a very specific subject but there’s a lot in it that resonates with me right now.

My last post was about our charity attempt at running in the Belfast marathon. Well, we did it! We raised a lot of money that will be going to the Community Brain Injury team that have helped myself and many others navigate the confusing terrain of brain Injury.

So I write to you today a bit achy, a bit tired and a mixture of happy, proud, relieved and grateful. I was posting pictures on Facebook and Twitter from the day and it got me thinking about what the outside world sees and how sometimes that is far removed from the reality of things (not just for me, I suspect we all put our happy, sorted and confident photos onto social media). It is nice to see people enjoying themselves but can be quite demoralising if you’re having an overwhelming day and think you’re not matching up to their lives. Tip 1: NEVER use social media to compare yourself to others, what other people post up there is only a snapshot of what’s going on, they get sad, frustrated and lonely too!

It occurred to me that there may be some dissonance between pictures people see of me and what is really happening in my day. There may even be some mutterings of ‘she’s not sick/recovering/ suffering, look at her there, dressed and outside’.

Posting images such as this one of my view during the marathon

or this one from Beltane

well these can make it seem like I’ve got it together and I’m ‘better’.

But as I’ve mentioned in previous posts brain injury without any obvious physical impairment is very much an ‘invisible’ disability. What people don’t realise is the amount of work that has gone in BEFORE these photos were taken.

It starts as an idea maybe weeks before it actually happens, there will be some days where myself and Mr Braingirl go to do what we’ve planned and anxiety or fatigue may have other ideas so back onto the planning stage it goes. So we wait for another ‘opening’. When we finally make it out of the door (usually with some lingering anxiety) we have to be able to park near to where we need to be, we also can’t plan for a full day – I get too tired, so we have to fit all we need to into a few hours.

Once we’ve made it through the obstacles we take photos, because it’s nice to take photos and make memories but it’s nice to have them to share with my friends and family and to also say “LOOK, LOOK I DID IT TODAY!” ( how sweet that is!). If you’re reading this and you follow me on twitter or Facebook and get to see my photos please try to imagine the strength it took to get that photo and be happy for me, encourage me. I’m happy when I post them, I look at them many many times because It feeds the part of me that bulldozes through regardless, it nourishes the nature loving, go get ’em bit of me that was lost for so long.

That bit is returning slowly, evidenced by lacing up my trainers on Monday and running in the rain and wind and cold a distance further than I have ever run before. A distance that I did despite the Mumu of Injury talking to me all the way through telling me I was damaging myself and I wasn’t safe. I ran anyway and I think that has to be a metaphor for the whole recovery process, a brain injury IS a marathon, not a sprint and sometimes you may have to stop for water and a rest but keep following the route and eventually you’ll reach the finish line.